Petrified

It's late. I'm tired but still awake.

When I'm here, I can fill my day with everyone else's problems. They seem more real anyway. From here my problems seem self-imposed and frivolous.

I spent my day doing things for other people. I'm physically exhausted but my mind is full of thoughts. It feels like I'm out of time, like I have to grow up now. Time to move forward and start taking action. No more excuses. I've made it to 32 but have nothing to show for it.

I haven't done any work in a week. My glasses were smashed tonight and this allergy medicine keeps wearing off every four hours. Wednesday marks one month until my health insurance runs out. I have so many people to thank and so much work to do. I have to get up in four hours and take care of a child and my parents.

One day soon, I'm going to wake up to find that I am 80 years old.

Day 169

Sometimes other peoples' pain overtakes me.  The sadness eats my consciousness until I'm a bumbling half-a-brain fumbling through my day.  Sadness replaces my appetite and my ambition.  It's too much for me.

It can be a stranger on the street or a disaster half a world away.  I have to stop myself from thinking about it or it will take over.  There's so much everywhere.  How does one avoid it?

A friend passed away yesterday.  More of an acquaintance than a friend, I guess.  Though I saw him five days a week for almost eight years, I can't say I knew him well.  He was the quiet one of the group.  Sometimes we talked about his fight against his own illness.  I guess we had that in common, though his was potentially fatal and mine, not so much.

He died quietly in his sleep of a heart attack unrelated to the long battle he had fought which, by all accounts, he was winning.  No one expected that he wouldn't wake up, too young, too healthy.  It was a total shock to me when I found out this morning.

I can't say I understand why I can't get over it.  Maybe I'm older now and I know what it means to lose someone.  Maybe I know what his mother and siblings and nieces and nephews are feeling today.  How hard it must have been for his closest co-workers who spent eight hours staring at an empty chair.  Actually, I don't know.  I know a fraction of their pain.  I can't imagine what this feels like.  Maybe that's why...

Day 144

I have been offline for a few weeks, okay probably closer to a month.  The first couple of weeks I had an amazing opportunity to travel to faraway lands (more on that later).  Then two weeks ago my grandmother passed away.  She was matriarch, in every sense of the word, to her family, her church and her community.  She was an incredible, gracious, generous, beautiful woman.  She lived through a lot but came out the other end of it all with a smile (and a wink). 

Her health began to fail her when I was just starting college.  Selfishly, I felt like I was robbed of the influence of an amazing mentor and support system just when I probably needed it most.  Her health declined quickly and her medication kept her in a suspended state somewhere between knowing and not knowing.  Every few years she would miraculously “wake up”.  She would be surprised by the age of her children, once asking one of my uncles “What happened?” while she studied his face.  Everyone would be surprised at her sudden awakening but, I think, it almost always corresponded with an upcoming surgery.  Probably one which required a reduction in medication in the days prior to the appointment.

To listen to the stories told by friends and family at her funeral, you would have thought my grandmother was a saint.  I think in her time people kept more to themselves.  If she had an unkind opinion of someone she kept it to herself.  If one of us disappointed her, she would respond with love.  Any scandals within the family stayed with that generation.  No one said a word much less tweeted it to the rest of the free world.  She was deeply religious, but never preachy.  Instead she showed us a better way to live.

In remembering her long, beautiful life, so much has come back to me that I had forgotten.  Like the shelves lining the steps to her basement that were always filled with jars of pickled vegetables, homemade jellies and other things she had canned.  The entire days we spent running errands and visiting people.  The countless hours we spent playing cards and cooking in her kitchen.  The way her car smelled like her.  The music she listened to (only church music) and her singing voice, always bursting with love and enthusiasm, even if not always in tune. 

She was one of those people who would have done anything for anyone, but she was one of the few who used that potential.  She was so proud of her nursing career and shared her expertise long after she retired.  She would drop everything to help anyone.  No request was too bold, not errand to inconvenient.  Everyone knew her and everyone loved her.  My grandma was your grandma.  Just moved here from a foreign country and need someone to watch your children while you find work?  No problem.  Have a health issue and need a consultation before committing to a doctor visit because you aren’t too mobile anymore?  Be right there!  Hungry, thirsty, hot, cold, tired, lonely and need a place to eat, drink, cool down, warm up, rest, visit or play cards for a while?  Come on in!  The door was never locked, the fridge was never empty, Grandma was never too tired or busy.

There were no debates surrounding saturated fat or high fructose corn syrup at Grandma's house.  I don't think she would have believed me if I had told her I don't eat gluten.  There was butter in everything she cooked and her freezer was always stocked with sweets.  Not the homemade kind, though she was a fine baker, the kind that were full of corn syrup and preservatives and packaged in bright, child-friendly colors.  Grandma knew what it was to do without.  She lived through the depression so she kept her freezer full and always had goodies for the grandchildren in there with the meat and vegetables.

The last thing I can remember talking to Grandma about was where I was going to school.  I had gotten into some decent schools but was denied financial aid.  I was trying to decide whether to take on the debt or go to one of the state schools I could still apply to.  I’m not sure why it came up or how, but the only advice she had for me was that it is important for me to have the same amount of education as my husband.    For my 19^th birthday, she gave me the necklace she wore every day, a gift from one of the doctors she had worked with, because her initials (the same as mine) were engraved on it.  Not long after, Grandma had the first of many strokes.  I visited her in the rehab facility and we played cards (she still beat me).  She came home for a few weeks but was permanently moved to a home after another stroke.  It was all downhill from there.

Grandma hung on for many years after but was never the same.  By the time I was diagnosed with Crohn’s Disease, she may have still known who I was but she was unable to articulate much.  Crohn’s Disease was probably beyond her experience, but I know she would have been a huge comfort while I was sick.  I wish she could have met my husband and taken part in my wedding planning (lord knows she would have restored much sanity).  Most of all I wish she could have met my niece who is her spitting image.  The two of them would have been the best of friends.

The only thing my grandma did that annoyed me was ask me to tweeze her chin hairs for her (these things happen as we age!).  It looked like it hurt but she always said it didn’t.  Her eyesight wasn’t good enough and her hand too shaky to do it herself.  She would hold her breath and I would cringe at each pluck.  I said every time, "c’mon that has to hurt!"  She would just smile.  I would give anything now to have her hand me those tweezers one more time.  It's so cliche, but I want to ask all the questions I was too young and self-absorbed to ask.  I want to tell her about all of the exciting things that are happening to us. I want her to know about all of her great grandchildren, and how her family has grown and spread out across the country.  I want to thank her for everything she gave me and tell her that I get it now.     

Most of all, I want her to know that, thanks to her, I am drinking from the saucer cause my cup has overflowed. 

Day 88

My days are often a blur.

I got up early this morning to load equipment into my car. I then sat in so much traffic that I was late for work. Before I got to my desk I had three messages and at least six emails waiting for me. I took on an extra project at work so I spent the first hour catching up on the usual stuff before spending a couple of hours taking head shots for my company. I spent lunch catching up with a friend who had to see her grandfather off to hospice over the weekend, then ate at my desk while I tried again to catch up on my work, give my sister beltway directions around DC from my desk in NY and find a replacement flight for my mother whose flight back from Florida was cancelled. I spent the rest of the afternoon catching up on work and editing photos then finished the day with a call from my boss (ten minutes before I was supposed to leave) who had a few more things for me to work on. I took a short walk with a friend before heading off to a lecture, then met my husband at the subway station where we picked up tacos from a truck to eat on the train ride home.

I long for moments of silence or a few minutes to read something for pleasure or catch up on the news. My father, however, spends his days waiting for something to happen, for someone to stop by, for the phone to ring. He recently had a stroke and was forced to retire. He can't drive himself anywhere or reload ammunition (formerly his favorite hobby). Phone calls from his children are sometimes the highlight of his day so I do my best to call him at least once each day. I called him, today, on my walk from the lecture to the subway. It was a short walk, but it was the only time I had. He was disappointed that I only had a minute and couldn't talk longer. He told me I always call when I only have a minute.

If only I could swap some of my crazy for some of his calm. The way this whole life thing can pan out is so cruel.

Day 45

It's Valentine's Day and I'm going to take a moment to Oprah it out.

I find this to be a silly holiday. I have a valentine, my husband. He is amazing and treats me well every day. We enjoy each others' company every day and enjoy splurging on expensive dinners if we have something to celebrate. Deep down in my heart, I see no reason to do it up for Valentine's Day. I hate that people actually feel pressure to spend money or do something crazy so their girl can go tell everyone at work the next day how wonderful her man is. I hate that everyone asked me all day what I am doing for Valentine's Day, what did I get for Valentine's Day. It kind of reminds me of my wedding.

We got married a few months ago. I haven't gotten the photos back from the photographer yet and I'm kind of relieved. I'm sure I could have pushed the issue a little harder but, truthfully, I'm nervous about getting them back.

On the day of the wedding, I was totally on that bridal high. You could have shown me cold, hard proof that the Earth was going to explode the next day and I wouldn't have cared. Everything we worked so hard to DIY together looked just the way we wanted it. Logistically, nothing went wrong, my husband looked amazing, everyone we cared about was there, but some people (on both sides) let me down and, as hard as I try, I can't let it go. I'm not talking about Bridezilla craziness, I'm just talking about letting me down when it meant the most.

We mostly did what we wanted to do but, in the end, we dumped a boatload of money on certain things that I would have been happy to budget up on. We invited a bunch of people we don't know well, some of them hurtful people, and I'm not sure why we did that. Looking back, I think I would have pushed harder for barbecue and a smaller guest list. I wish I wouldn't have cared about pleasing people who don't care about us. Sometimes, looking back, I feel embarrassed and icky.

I'm afraid to get the pictures back. I'm afraid I won't like the way I look. I'm afraid that I will be upset all over again. I'm afraid that the pictures will be up all over Facebook so that, not only the people we did invite, but hundreds of other people we didn't invite will have a ticket to the show. I'm afraid I won't have control over what happens to my own wedding photos.

I created my own insurance policy before we got married to make sure that no one else had any say in how my marriage began and it was probably the smartest thing I've ever done. This is not about my marriage. It's about the show we put on for everyone else. It was something that happened because we were expected to make it happen, just like the roses that show up on everyone's desks on February 14th.

My relationship with my Valentine is serious, and private. I don't need to be told how or when to celebrate our relationship, it's not meant to be entertainment.



*No harm meant to V-Day lovers. Go for it! Maybe you can send me your email addresses so I can divert the questions to you tomorrow?

Day 44

I'm sitting on a train, heading home to see my parents. More specifically, we are going to the hospital tomorrow for my father's one month, post stroke visit.

I've lived through enough to know that this was another turning point, when Dad had his stroke. We will tell stories now about before Dad had his stroke. We will talk one day about Dad never being the same after his stroke. We've already worried over what we should have done differently when Dad had his stroke. For several weeks prior to his fall, we noticed that he wasn't the same. Something about his facial expression. He seemed slower, less alert. Something just wasn't right. We should have done something then. But we did! Mom made him go to the doctor who said his thyroid was low. He wasn't home when they called so they told me about his thyroid. I knew it was nonsense. I cursed the lazy, overbooked family doctor I saw as a teenager and young adult. But I didn't do anything.

Then he fell. He told us some story about taking his meds without having had breakfast. We gave him some crackers and water and didn't call the ambulance. He told us not to. We knew he was going to fall as soon as we left him by himself, but we still didn't call the ambulance. We waited until he fell again. We learned not to question ourselves, our instincts.

This brings me back to healthcare and how far we still have to go in this country. Living in New York where the best of the best are available if you have enough money (this absolutely includes healthcare), I've forgotten how mediocre the healthcare is in my hometown and probably in most other rural communities. I've had enough hour-long visits with my New York doctor, his door closed, phone muted, to forget what it was like. I've forgotten how frustrating it is when the one person who may be able to help you leaves the room every two minutes of your fifteen minute visit. I've forgotten how scatterbrained the doctor can be when he has three other patients waiting in other rooms. I've forgotten how devastating it is when the doctor is in such a rush that he mixes up your paternal grandmother's diabetes with depression because it's the next disease on the list, then prescribes antidepressants instead of doing his best to find out that you have Crohn's Disease.

There is no reason why a DOCTOR should see a 64 year-old man with high blood pressure who is having trouble walking and is confused and NOT suspect a stroke. Looking back now, it is so obvious. Thyroid medication? A higher does of blood pressure medication? Did he really not suspect a stroke? Did he not think for a second that he should do the simple motor skills tests the doctor used at the hospital to help diagnose my dad's stroke? The simple, free tests that would have cost him only an extra five minutes? Where was his mind? On the insurance checks that would come rolling in after he cycled through the waiting room full of people?

So here I am on the train. I have to fight for my dad because he won't fight for himself. I'm not ready to let him die because the doctor is too busy.

Day 30

Some days (weeks, months) are taken over by difficult decisions based on difficult facts and difficult conclusions... not what I had it mind for this year.

No one ever tells you what this part of life is going to feel like. Adulthood can be a lonely place.

2012, Day Five

I think I am pretty cool under pressure. I can handle travel emergencies, weather emergencies and medical emergencies but I cannot handle drama. Drama, especially drama just for drama's sake, makes me a total panicky mess. I can't handle it at all.

2012, Day Four

I am spreading myself too thin. I know what my problem is, but how do you fix a lifelong habit of making sure everyone's okay?

This year I gotta make some moves. Right now, there's a lot to do and only a few days to do it. I need a gigantic "Do Not Disturb" sign.

2012, Day Two

It's always unnerving when something jolts you out of your daily grind, the thing I despise most but is sometimes oddly comforting.

One of my all-time favorite commercials is for the New York Lottery Instant Games. The commercial features New Yorkers in their everyday routines wearing outfits that indicate what they would do if they won the lottery. So there's a woman in her office filing papers in a wedding dress and a barber wearing a captain's hat and life jacket. The song playing in the background asks "Are You Ready?". The premise is that everything can change in an instant and those people on the subway platform in their bathing suits are ready, are you? I love this commercial because I am definitely both a planner and a dreamer, and I so love the imagery. That bus driver in his tennis gear got the facial expression perfect.

I think we've all dreamed about what we would do if we suddenly came into a bunch of money or what our lives would be like if we landed that dream job, owned the house we've always wanted in our minds, had those kids we've always planned for. I've never dreamed about what would happen when my parents get old and can't care for themselves anymore. It sneaks up on you then, one day, smacks you in the face. I'm not sure anyone can ever be ready. To see the strong man who took care of me all of my life reduced to a pile on the floor who cannot help himself up is earth shattering. It changes the way the world looks. I definitely wasn't ready.

2012, Day One

Spent 12 hours in the emergency room.  Wiped out.

Happy Chrohniedays!

I hit up the pharmacy this afternoon for my meds. It's only been a month since my insurance company started covering my prescriptions at 100%. I still cannot believe that I can walk into the pharmacy and walk out with my script without any money changing hands. It's like a layer of stress has been lifted from my shoulders. No more claim forms. No more angry calls to the insurance company (well, as soon as I get the rest of the flex payments they owe me for 2011).

A few weeks ago, my husband got the cold everyone seems to be passing around. I was fine for a week or so, then a coworker came down with a different variation of the bug. I guess my immune system had enough and I got it too. I feel much better than I did a few days ago but it seems to be lingering. I skipped my Humira last week (do you guys do this when you get sick?) in hopes that a little immune boost would do the trick. Who knows if that helped at all. My voice fades by the end of the day and my right ear feels a little waterlogged. I should probably call the doctor but, seriously, who has the time right now?

Holiday festivities begin here Thursday with an airport run then a quick trip in to the city to see the Rock Center tree before driving to my parents' house. I purchased my last Christmas gift today and wrapped everything. I ran out of Christmas paper three quarters of the way through so my niece is getting some books wrapped in flower paper. What? There's a recession!

I'm feeling pretty calm this year. I found some good sales, got some good gifts, have all my stuff together four whole days before Christmas. I'm looking forward to a stress-free holiday week and wishing the same for all my Crohnies!

2011

I was going to put writing off until the new year but just decided there is no reason to wait.

This year was complete insanity. We shot a film, my family grew by two (one husband (mine), one baby (not mine)), we battled cancer, we threw a huge wedding, I changed my name, we won awards, we planned for the future, we battled Crohn's.

All of these things were life-changing. No one thing completely changed me but each one altered my outlook on life. I feel the change. I feel like I am a very different person than I was on December 10, 2010. This year I feel more confident, I feel stronger, I feel hopeful, less restless. I know things now that I didn't know then.

I didn't think marriage would change a five-year, live-in relationship. I didn't think it would, but it has. I know my best friend will be right next to me, supporting me, for the rest of my life. I know my success is his success and my failures his failures (and vice versa). As much as I thought it wouldn't change, it has. Marriage is far more profound to me now that I have taken part. It does feel different. The change has come. We are married.

This year, I witnessed a new life come into this world. I was there through twelve hours of labor and literally held my sister as she gave birth. There was a lump in my sister's stomach and then, suddenly, another person in the room. A new life that we are all responsible for. We must do what we can to make sure she has what she needs to live a good life. My sister will take care of the baby's basic needs but the rest of us will surround her with love and teach her the things my sister can't teach her. We are in charge of spoiling her and letting her know we're on her side but her mom is right. I never realized I had the capacity to have so much love for someone I never met, but everything changed the second that baby was born. I have changed. I look forward to having my own someday soon.

I'm looking forward to another year of ups and downs (hopefully more ups than downs), another year of adventures with my best friend, another year of laughing until it hurts with my family.

Dear Crohnies, I know some years are harder than others. I know how difficult it is to get through the daily rigors of life when you are so sick for long periods of time. My wish for everyone for 2012 is for you to find what you love to do and do it. Whether it's a hobby or career or whatever, do it. We're all going to die.

The biggest lesson that was reconfirmed to me this year is that, no matter what happens, life is what you make it.

Decisions, Decisions

I don't know what happened. I feel like I am stuck in some sort of time warp or something. Are there really only four days left in September?

Since I've been feeling better I feel like I've been going at life full speed. I've been out of town most weekends this year which has been great but exhausting. I'm doing much more socially and otherwise, and it feels really good. Then there's this whole wedding planning thing...

Since we've been engaged we've been making plans (then changing those plans (over and over)). Everyone wants to know how it's going, what we're planning, how far we've gotten, what's the date, where's the wedding, am I going to go to Kleinfeld's, are we going to make sure the wedding is near hotels, the airport, have I thought about making my own dress, and on and on and on and on.

In the beginning, we both kinda got wrapped up in all the silly wedding stuff. As time goes by, I do more and more research and hear more and more ridiculousness from potential wedding guests. I am, at this point, over it. I have decided that six month's rent for an open bar is absolutely absurd even if the venue is near the airport. We are not going to spend a zillion dollars for some stuffy affair that is so not us because it would be more convenient for some people who have never traveled to visit us before and will likely never travel to visit us again. If our venue is too far from the airport or too late in the year, they can stay home.

I will be making some concessions. I will probably wear a white dress, although I will not spend four figures on said dress. I will invite a bunch of people who have nothing to do with my life on a daily (montly, yearly) basis but I will not spend $150 on each of their dinners. I'm not going to spend my life savings to impress a bunch of people who live in other parts of this country and world with whom we have no regular contact. It's all incredibly illogical to me.

I take my relationship, my fiance and my life plans very seriously but, as it turns out, our life is dictated by the decisions we make, not by the convenience of our plans for our extended families. We do not live near either of our families and, although we speak to our parents on a daily basis, they have very little to do with the decisions we make and the way we live our lives. We love each other and respect each other and make a pretty good team. None of this will change because we are married.

So - we are going to have a party. One where a friend marries us and we will eat popcorn and gravy fries and keep some of our money in our savings account. I don't think most of our family will get it, some of them will make jokes and have lots of criticism to share between them but I have decided that's not important. We are going to have a wedding to make our parents happy but we're going to do it in a way that makes us happy.

Phew!

Crohnie